New perspectives on palliative care: the role and expectations of caregivers

This qualitative study conducted at the “Sf. Nectarie” Pal­lia­tive Care Center in Cluj-Napoca investigated the perspective of family caregivers of patients admitted between August 1st and September 30th, 2024. The study aimed to analyze the level of knowledge of family caregivers about palliative care, their expectations, and how they manage the difficult si­tu­a­tions associated with the advanced illness of their loved ones. Methodology. Data were collected through a ques­tion­naire with open-ended and multiple-choice ques­tions applied to the family caregivers of admitted patients. Out of 142 patients, 57 questionnaires were completed, re­sul­ting in a response rate of 40%. The questionnaire ad­dres­sed aspects such as the reasons for admission, sources of information about palliative care, understanding of the concept, caregivers’ expectations, and preferences regarding medical interventions in case of worsening of the patients’ condition. Demographic data on patients and caregivers were also collected. The majority of patients were from urban areas (70%), were over 65 years old, and the gender distribution was relatively equal. The average length of stay was 18 days, and 91% of the patients died during this period. The caregivers were pre­do­mi­nantly women (56%), over 56 years old (51%), from urban areas (79%), and with secondary or higher education (90%). Results. Reasons for admission: inability to provide care at home (32%), worsening of health status (23%) and improving the patient’s quality of life (18%) were the main reasons identified. Sources of information: medical staff represented the main source of information about pal­lia­tive care (40%), followed by acquaintances, friends, or fa­mi­ly (31%). Understanding of palliative care: caregivers per­ceived palliative care as specialized care (37%) or through its principles (46%). Expectations: the main expectations in­clu­ded relief of suffering (25%), inability to give an answer (21%), and improvement of health status (21%). Preferences in case of worsening: in the event of worsening of the health status, the majority of caregivers opted for calling the emergency service (37%) or transfer to another hospital (25%). A significant percentage (67%) considered it useful to perform resuscitation maneuvers. Conclusions. The stu­dy reveals a partial understanding of the objectives of palliative care, with a particular emphasis on pain and symptom control. It highlights the need to improve care­giver education, diversify communication channels (es­pe­cially for those in rural areas), and clarify aspects re­la­ted to resuscitation in the context of terminal illnesses. It is recommended to implement personalized educational pro­grams, increase access to relevant information, facilitate discussions about the care plan, and offer psychological support to caregivers. Furthermore, the imbalance in access to services between urban and rural areas is highlighted, as well as the difficulties encountered by elderly caregivers in caring for patients at home. The study underscores the need for a clear legal framework regarding the resuscitation of terminally ill patients.